With fast-moving diseases like Krabbe, you don’t have time to waste. At our very first meeting, Dr. Escolar gave us prescriptions for equipment we wouldn’t need for months. She told us to start obtaining things like the suction machine, stander, adaptive stroller, etc. because we wouldn’t want to be without them when we needed them. And she was right. Tori lost her ability to swallow suddenly (three months later) and we didn’t have the suction machine yet.
Tori’s wonderful physical therapist worked hard to obtain most of the necessary equipment for us in a timely fashion, and we were so thankful. But some families get stuck waiting and waiting – and sometimes the equipment comes after the child has already passed away.
This is yet another thing that just shouldn’t happen.